Everything I Tell You is Hearsay

This week started out with such promise, then came the descent.

Oscar went rogue in a way that required a more-than-customary degree of medical intervention. 3 days into this hospital stay, I still have no definitive plan for the immediate future. It’s clear I’ll need surgery, but not precisely when, where, or to what extent the procedure will reach.

Double Dose of Dahlias

As ever, there are several considerations at play which impact my course of treatment; my recurring flares have not responded to the biologic intervention and are currently only quelled with steroids. This is problematic because apart from making me feel awful in a whole host of ways, steroids have a raft of nasty side effects [high blood pressure, bone loss, impaired endocrine function] rendering them untenable as a long term treatment. Moreover due to their tendency to cause excessive bleeding problems and delay healing substantially they are troublesome in terms of surgical intercession.

There’s a lot of uncertainty around how to proceed, and coupled with the fact that I Am Not A Patient Man, I also find it difficult to maintain my emotional equilibrium in the face of ongoing ambiguity. Plus, I might have to get a doo doo bag. For THREE MONTHS.

I feel very fortunate to have a supportive group of people taking as much care of me as I will let them. I’ve had well-wishers, and foot rubbers. Clothes-bringers and entertainment providers. Flowers and conversation have arrived at beneficial intervals, and I am moved again at the generosity of my selected family and friends.

I have also had a compassionate troop of caregivers here at Providence who have only reinforced my admiration for this health system where I am fortunate enough to work; to underscore that it is well-founded and grows by degrees. Their obvious interest in my physical well-being is complemented by an equally apparent desire to comfort me emotionally. Lastly there is a manifest willingness to patiently communicate with me about my concerns and questions that lacks any hint of exasperation or condescension that stays in O(ther) (H)ospitals (S)adly (U)pheld*

I’m trying to keep busy and positive, and to rest as much as I can. I am hoping that though this week took a dive, I’ll rebound like the little rubber bouncy ball I really am inside. A swirly purple glitter one.

*That was a stretch, but I am on morphine, so it’ll have to do.

I am delighted to report I am finally starting to taper off the steroids I’ve been taking since April. While they made life bearable and allowed me to remain largely functional, their laundry list of side effects have been nasty to deal with. Here I cite:

• Sleeplessness: Waking up at 4 a.m. is obscene and I was doing it no matter when I fell asleep which varied between 8-11 p.m. depending on how readily my body cooperated with my efforts to go to bed during what still appeared to be daytime.
• Muscle tension: Much like Goldmember, everything was very toight! This lead to some injuries despite my efforts to stretch and left me achy more or less all the time.
• Hearing and Vision Changes: This tripped me out, but both my eyes and ears underwent a certain degradation in acuity. Ears felt constantly full and like they needed to pop. My eyes were much less responsive to attempts to focus and freaked me out more than once when I looked up from a book I was reading and literally could not see anything in the distance as more than a goopy blur. I am assured this is temporary. Just what I one-eyed girl needs is a downgrade in visual clarity.
• Increased Blood Pressure & Glucose: You stay on this stuff long enough you’ll seriously degrade your vascular health and get the dia-bee-tis.
• Dental Sensitivity: Leeches the calcium right out of your bones. Including teeth. I’m drinking everything through a straw these days. Osteoporosis is another common problem for folks who require long-term treatment with steroids.
• Weight Gain: My personal favorite and loudly lamented to everyone’s extreme annoyance. Thirty pounds people. Thirty.

Living in this body has felt a bit like driving around someone else’s decrepit, temperamental, clunky Asphalt-Barge when I am used to piloting a trim, responsive, and sleek ZoomGo-er.

Of course, now coming off of the meds has it’s own set of drawbacks.

After weeks of not being able to sleep properly, I am now constantly exhausted. This of course makes all the sense in the world, but since I do not have the leisure of simply snoozing the next month away, it’s been a bit of a drag. Even with the influx of enough caffeine to cripple a small buffalo, I am still logy more or less all the time. Working, running, chores, and anything other than lying down and sweating profusely seems beyond my current scope of practice. 

Also, now that the muscle tension has begun to subside, my joints ache like it is what they were made for. Headaches, as the vascular constriction I have been suffering for weeks starts to relent. Mood changes are also very much par for the course, and I have been more than a little weepy of late. All of this, coupled with the news that NSAID’s are basically the devil incarnate for anyone with Crohn’s and I am an achy, tired, weepy piece of work.

My second infusion of Remicade is Monday. They tell me with that treatment, my symptoms (GI, not so much the withdrawal) should start to substantially diminish. I’m hoping that since I’ve already noticed them subsiding to a certain extent, that this dose will drive Oscar* into hiding for the long term. Once he’s vanquished I hope to reclaim my body once more. During that process, I ask for your patience if I am weepy, your forbearance if I am slothful, and a blankie if I nod off…

“You Talkin’ To Me?”

*Oscar is what I have named my digestive complaint. The gurgling noises that emanate from my guts have a distinct personality; much like the can-dweller it has an acerbic sense of humor, irritating timing, and lives somewhere pretty gross.   

One of the side effects of all the steroids I’m taking* is that my already tenuous grasp on sleep has become even slipperier. Though I have gone to considerable lengths to control for sound, light, and other elements of sleep hygiene it has been my custom these last few weeks to waken at about the same time the very faintest traces of light begin to show in the eastern sky.

The Angle of Approach

This works out to be a time that a lot of people still consider the middle of the night. And I am one of them.

Try as I might, I am usually unable to coax myself back to slumber. At some point, I realized that given the turn of season, and the impossibility of running after work for the intolerable temperature that time of day, I might as well avail myself of the insistence of my body and use my wakefulness to put some miles under my feet.

I love running first thing in the morning. Everything is limned in pinkish light and cool as it will be all day. It is quiet and still on the streets and down the trails I favor. The city is stripped of pretense and beautifully bare. Places are unhaunted by a populace too occupied with their devised reality to notice or participate in the full flower of the one around them. I am elated to encounter the bronze-haired Portlandia as I have always known her; maiden earnest, singular, and strong. That is how I prefer to see her, rather than the awkwardly hewn caricature she has been wrought of late.

So, despite a list of complaints that range from a shocking need for drinking straws at every turn for my newly sensitive teeth, to aching tendons, to butterface of EPIC proportions, I am grateful to these chemicals in my blood. Not least that they allow me to rise from my bed of pain at all, but also so that I do in such very good time as to see my city in a way that reminds me why I love her after all.

*Not the kind one takes to get mad gains in the gym, though don’t kid yourself; ‘roid rage is a thing. I can’t speak with authority about whether my testicles have shrunk…

I eat a mess.

Don’t Forget Greasy!

While I’m not immune to the appeal of the trite and its conferred understandings, I like to think I approach most areas of my life with more nuance than clichés will usually afford. In this case, given all things in consideration, I’m willing to concede the allure.

Today, I’d felt sort of defeated by the onset of tasks I was previously able to defer for one reason or another. Whether it was the lack of a clear diagnosis for my ongoing health issues, a series of beloved out of town guests, or simply the weekend there were a slough of excuses this past week to keep me from any sort of practical application toward the undertaking of some much needed lifestyle modifications.

I thought I had come upon a clever solution to skirt the hardest part of the changes I want to make, and was quite pleased with myself on account of it. Upon further inspection and in consultation with both my doctor and a friend who is much more experienced with dietary restrictions (plusalso smarter and more observant) I realized this clever plan was both bad and self-defeating as it actually failed to eliminate several of the components I am trying to isolate from my diet for diagnostic purposes.

Confronted with this information, I started crying.

I have always had a combative relationship with food. I know most people encounter food as a joyful sensory experience to be savored. I generally encounter it with the satisfaction of a well-completed chore I’d prefer never to repeat. Like cleaning out the lint trap; I love when it all comes off in one piece, but better to never have to deal with it in the first place. It has perpetually seemed like a cruel cosmic joke humans don’t run on batteries or gasoline; something one could obtain, of which there was basically only one kind and quality that did not necessitate further planning or preparation than plugging the full thing where the empty one was and moving on with the day. This was why when the Kickstarter campaign for Soylent came about, I was super excited. This seemed like a thing for me! Something I would willingly try and possibly find perfectly suited to the amount of time and energy I would ideally like to expend thinking about, obtaining, and consuming food. 

Things have gotten much better in the past few years as I am both more rational and less cavalier about the results of ignoring the consequences of putting things in my body I should not, as well as depriving it of things it needs. Yet even with that being the case, I am still occasionally brought to a complete halt by the decisions I have to make about eating. The last time I tried an elimination diet to the ends I am aiming for this time, with my very patient and compassionate boyfriend going so far as to prepare meals for me on a regular basis, he was nonetheless baffled by all the tears I shed over what I was – or was not – eating. Without anyone holding my hand or looking over my shoulder this time, I am even more intimidated by this prospect.

Hard experience has taught me how to minimize these occurrences; planning, easy access to acceptable options, and the support of the people I am eating with are all very helpful. However, even bringing all of this to bear, there are still moments – and they are both more frequent and intense when I am trying to defy my natural tendencies in a systemic way – where I feel so overwhelmed by the task of nourishing myself that I simply refuse to do it at all. I have legitimately taken a sleeping pill so I could sleep to avoid making a decision about what to eat.

With a Crohn’s diagnosis, I have an explicit set of challenges to consider with regard to my diet going forward. While the condition itself is autoimmune and not driven by dietary factors, there are undeniable connections between diet and immune response. Moreover, since the gut is the arena-of-action, as it were, there is no real way to extract the process of eating and digesting food from the experience of having Crohn’s. All that being said, there isn’t consensus about the kind of diet that serves a person with Crohn’s best. There is ample anecdotal, testimonial, and promotional advice, but no evidence based, peer-reviewed dietary recommendations for this diagnosis. The most echoed sentiments are things like “Patients must pay special attention to their diets as concerns about nutrient absorption persist with this condition.”

Read: “since whatever food you do eat will likely shoot out of you at both ends in a spray of hot bile and sadness, make sure you take some vitamins, okay?”

Being my particular difficulty with the whole idea of confronting food that isn’t bacon, ice cream, or potatoes as a source of thwarting my attempts to consume more bacon, ice cream, and potatoes, this lack of dietary guidance feels especially ironic and defeating. 

Hearkening back to the Soylent; I thought I might have a simple solution to eliminating some of the main culprits in my diet that might be contributing to the inflammatory response in my guts. I could simply spend a week or so NOT EATING FOOD AT ALL but instead having that decision already made, and a meal just the quick shake of a plastic tumbler away. It seemed likely to remove most of the emotional angst about the process and I was fuckin’ pleased with myself for thinking of it.

Alas, it was not to be.

For you see, in my head, Soylent was dairy, gluten, and soy free. In reality, it is only one of those things, and the other stuff they put in it to make up for it not having dairy are weird and turn out to be pretty counterproductive in terms of providing any kind meaningful information about things I might need to keep away from.  

So then, crying.

Luckily, that smart friend of mine is also someone who cares enough about me to make an effort to suggest some alternatives and offer meaningful practical support like going to the grocery store with me. She may not be my boyfriend, but I still think I can count on her to look over my shoulder if I ask her to. We found another option which really IS gluten/dairy/soy free, and though I probably can’t just survive on it alone, it can be a go-to default option should I arrive in the valley of the hard stop where my options seem only to be defeat or starvation. 

So here begins my attempt to gentle my ileum into complacency again with tender words, good intentions, and apparently nothing that tastes good ever again.

Time to clean up the mess.

[uhn-ri-len-ting]

adjective

1. Not relenting; not yielding or swerving in determination or resolution, as of or from opinions, convictions, ambitions, ideals, etc.; inflexible: an unrelenting opponent of the Equal Rights Amendment.
2. Not easing or slackening in severity: an unrelenting rain.
3. Maintaining speed, effort, vigor, intensity, rate of advance, etc.: an unrelenting attack.

As much as I wish it wasn’t so, I am kind of a crybaby. While I can bear up under considerable opposition, I never do so with any discernible measure of stoicism. I’m tough in my way, but I figure if I have to suffer, I want credit, if not for bravery, than at least for endurance. Much like people who endure pain more readily when they curse aloud, my fortitude has volubility. I realize this approach doesn’t always evoke sympathy, but I doubt if I’m functionally capable of holding it all in, so I simply consider it the cost of doing business.

In case it was in any way unclear where this prelude was headed…

I’ve been some kind of sick since mid-January and I am motherfucking tired of it.

Partly to blame, I’m sure, is the transition from a small office environment into a cube landscape of considerable scope. In this setting there are dozens of people touching doorknobs, fingering keypads, and generally fouling the environment with their germiness.

In addition, Hodie has in her turn taken charge of a munchling as babysitter extraordinare several days a week. Since, as everyone knows, children are the bringers of pestilence and disease, mine has brought the sickness she’s contracted from the miniature microbe factory down on me at least twice since she started.

I am weary beyond expression of feeling like shit. Between the onset of gut-gripe that happens every four weeks and lasts for two, and the hideous cold/bronchitis/sinus blech I’ve had interspersed, I would give my bad right eye for a month or two where I just felt fine; where my running and gym schedule wasn’t interrupted by ailments of unpredictable severity; where I could work a week entire uninterrupted.

Such lofty prayers I voice, these days.

this disease causes me to vastly overestimate my physical capacities. i think i am stronger and have far more stamina than turns out to be the case. this disease is made worse by the application of things like red bull, or more pertinently here, 5 hour energy (which i bought a case of at costco today WOOT!!) this fine Sunday, my disease manifested itself in the following way: first i went to the gym for an hour and a 1/2 and then decided to go on a 40 mile bike ride. full on.

i live at the top of Sylvan hill and since i value my life, i will not attempt to ride either up or down it. so i took my trusty trek and loaded onto the max. i started my ride at the pioneer place mall and rode all the way out to where the pavement ends on the springwater trail. this is somewhere past the 20 mile marker. this seemed like a perfectly reasonable thing to do before i left my house.

by the time i’d wheeled thru gresham i needed a snack FUCKING HARD. having left the house without any food wasn’t so smart, i’ll admit, but i’m pretty sure the 1/4 pound of ham & cheese hot pockets and 1/2 a bag of chili cheese fritos wasn’t necessarily the brainiest thing i have ever done either. there was some protest from the abdominal region. especially after i climbed back aboard the trek just a few short minutes thereafter. abruptly i felt the need for a little break RIGHT NOW DAMMIT. my belly felt the 50 or so crunches i had subjected it to that morning were enough of an insult without the addition of enough nitrates to kill a small camel. i decided that the bench by the trailside looked like a lovely place to take a wee siesta.

my view from the bench was quite lovely actually…

after i’d rested a bit i hopped back on the bike. turns out i was only a couple hundred yards from the end of the pavement at this point. the trek has super skinny tires, off road is out of the question. i was fairly sure my ride back was gonna be brutal, so i was quite happy to make my little u-turn and start heading west.

coming back i felt like every part of my body was protesting at the treatment i had subjected it to. knees, thighs, abdomen, shoulders, wrists. ugh. i had vivid fantasies about how my couch was going to feel once i got to sit on it. i needed a break, but every bench i encountered seemed to be occupied by people who seemed like semi-permanent residents. like, they had auxilary furniture surrounding the benches. i was smelly, sore, and, i’ll admit, am not overly fond of trail-dwelling hobos even under the best of circumstances, so i did not feel like sharing my bench with anyone else. or asking them to share theirs, as the case may be.

after about 13 miles, i found an unoccupied bench and sank down upon it with the gratitude i usually reserve for the toilet after a 45 minute car ride and frantic dash indoors.

i am MUCH happier to be sitting down than i appear

i was counting the miles in single digits and for this, i was fuckin overjoyed. the sun was starting to wester, and all i wanted in life was a soft place to put my ass. the max station began to seem like a source of satisfaction and pleasure i had previously only known in the beds of certain lovers i have had.  godDAMN i have never been so happy to make use of public transportation. ever.

back up the hill home. carried the bike up two more flights of stairs. then, oh, then. my home. my couch. thankyoubabyjesus. i have rarely been too freaking tired to stand still under the shower, but by god, i was at first.

i guess i’m proud of myself, though i feel like a dumbass for thinking that 40 miles would be a cakeride. i imagine my hubris will be punished. i expect to feel like i got beat with sticks by this time tomorrow.

pray for me…

it is too damn hot.

let us all pause a moment to pity this sweaty bastard

i have just never been in a situation where i felt it was necessary for temperatures to exceed 84° which is; hot enough for lounging, the enjoyment of various bodies of water (man made or natural!), and the consumption of mojito (or the mint-based alcoholic beverage of your choice) but not hot enough to cause unsightly dampness to spread across the backside of portly strangers with that special brand of virulence reserved for days they choose to wear shorts.

i went outside at lunch for a brief moment of respite from the insistent crankiness of the overheated myopics and was SMITED by the temperature. i’ve been sitting on front of my gigantic window ever since dreading the moment when i go reclaim Klaus from his exceedingly sunny parking spot to go forth from here.

can it be fall now?